Peripheral Neuropathy

just4Brooks
just4Brooks Member Posts: 980 Member
in Colorectal Cancer #1

Okay, let's talk about after cancer and the side effects of our cancer fight. i was  diagnosed in 2009  and did radiation with chemo pump, surgery, then aggressive chemo treatments,  then followed up by many other surgeries  due to radiation and chemo damage to my intestines. My main issue now is my neuropathy witch is in my upper extremities, intestines, and  lower extremities. The main issues  with my neuropathy is the pain in my legs. It can go from a mid-level pain to extreme pain so bad all I can do is  lay in a fetal position and cry. My doctor  has me on a combination of Fentonal pain patch for long acting and  OxyCotton for breakthrough pain with no other meds working. After the years of being on the pain meds they seem not to be working as well as they once did and with all this anti pain medication hype my doctor won't raise my dose and may even start cutting me back. I know theirs other Neuropathy suffers out their so thinking maybe you can help me and my doctor by giving us some treatment ideas. My next question is did your doctor tell you the chemo drugs will cause  neuropathy and in my case severe peripheral neuropathy? 

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    edited June 2016 #2

    Peripheral neuropathy is also a permanent issue for me, but mostly feet and hands.  An integrative med MD recommended Alpha Lipoic Acid, 600 mg twice a day, and my primary care just told me to add L-Glutamine - 1500 mg twice a day. (The integrative med MD said 10 g of Glutamine/day, but I never tried it.)  He also recommended Magnesium Citrate - 400 mg/day.

    So far, I've only used the Alpha Lipoic Acid, and that helped.  However, with current changes, I'm adding in the Glutamine.  We're trying all complementary options before considering Lyrica or Gabepentin.

    Alice

  • vtspa6
    vtspa6 Member Posts: 172 Member
    #3
    I understand that the

    I understand that the oxliplatin (sp?) from the Folfox treatment is the cause of neuropathy.  My husband has it bad in his feet, hands, mouth, tongue.  He had 10 treatments of Folfox then went on to Folfiri due to this side effect.  He complains about it every day.  Is now taking Lyrica but does not help like he would have hoped.  Out of all the side effects, this is by far the worse.  He is still doing chemo (#19 and counting) so that probably does not help with the neuropathy.  I sure hope you can find some kind of peace with this.

  • ron50
    ron50 Member Posts: 1,723 Member
    #4
    G'day Brooks

        I never had any of the platinum chemo . I think that the 5fu must also bear a lot of the responsibility for long term neuropathy. I was dxed by a neurologist with severe motor sensory peripheral neuropathy of both feet and legs as well as my left hand. He was not prepared to say that chemo was the cause and there fore refused to offer any treatment. My gp's over the years have tried me on lyrica ,neurontin , endep , norspan and fentanyl patches. None of those helped and all had their own side effects. I spent over two years on targin which is oxycodone/naloxone and finished on a 40/20 mg dose twice a day. It worked initially but the dose was always being increased upwards. I had dreadful trouble with opiate induced constipation and every time I took a targin I had to take two dulcolax and two coloxyl to counteract the constipation. Eventually the targin stopped working or started causing more pain than they stopped ,hypo-algesia.  It took me 34 weeks to slowly wean myself off them and when I stopped I still had around a week of withdrawel. I am taking nothing for the pain and the burning in my legs now, I guess I have just become reconciled to the fact that most of the cures are worse than the problem. I hope that they can find something to help that does not cause you too much grief. PS I did not like fentanyl patches at all , they really made me feel strange. I started getting my neuropathy about six years after chemo and at 18+ years it has not improved at all, Ron.

Discussion Boards